At 14, Newnan resident Tiffany Wilson is already inching above her parent’s heads. With her long blonde hair and smile at the ready, she looks like any other teen. But the smile that creeps across her face when she talks about her friends and the fun she has when visiting Baltimore belies the medical challenges and constant pain, she endures.
“Tiffany is our sweet and full of life 14-year-old daughter,” said her mother Jennifer Wilson. “With all that Tiffany continues to battle, she goes through life having the best attitude and everyday finds things to be joyful about. My husband and I work tirelessly to provide for Tiff and are always looking for ways to find special things for Tiff to go and do to take her mind off all of her challenges and help her feel normal if only for a short time.”
One partner they have found in that mission is Ronald McDonald House, their home away from home in Baltimore where Tiffany receives treatment at Johns Hopkins Hospital about every three months and in Atlanta where she does therapy several days a week.
Mystery health problems
Tiffany’s health problems started as a vision issue as she finished kindergarten in 2016.
“She could not read or write because of what we found out were problems with her eyes,” Jennifer Wilson said.
Her eyesight was fine in March for her annual physical, her mother said. But by May, her eyesight had deteriorated and she was diagnosed with a few different eye conditions that distorted her vision. So she started eye therapy.
Then, issues popped up throughout Tiffany’s body. She was diagnosed with a hole in her heart. Two years later, the aorta in her heart became dilated and was at risk of an aneurysm. A few years later she was diagnosed with Type I diabetes. Tiffany experienced extreme pain in her back, her legs, her hips, her shoulders, “just everywhere,” her mother said.
They spent years chasing symptoms, not knowing what was going on with their daughter.
“It was later, when they placed all the pieces of the puzzle together to really come to find out what (was going on), Jennifer Wilson said.
That happened when a young doctor from Africa doing his residency on the endocrine floor at Johns Hopkins where Tiffany was being treated for diabetes approached them, she said.
He had taken an interest in Tiffany’s medical history and noticed some similarities to a rare genetic disease he was familiar with from his home. Her gait when she walked as her legs had begun to rotate outward was what convinced him, he told them. He suggested some specific tests including a genetic test for her and her parents, because he believed she had Marfan syndrome, Jennifer Wilson said.
Learning about Marfan Syndrome
The Wilson’s had never heard of Marfan syndrome, a rare genetic disease that affects between 50,000 and 200,000 in the U.S., Jennifer Wilson said.
Marfan’s syndrome limits the ability of the body to make the proteins necessary to build connective tissue. It can affect the skeleton, lungs, eyes, heart and blood vessels, according to the National Center for Biotechnology Information.
“The disease is characterized by unusually long limbs and is believed to have affected Abraham Lincoln,” the NCBI website states. Although no genetic tests were ever performed to prove that theory.
While it is genetic, one in four people who have the syndrome develop the disease for unknown reasons and that is what happened with Tiffany. Neither she nor Chad Wilson, Tiffany’s father, have the genetic variant, Jennifer Wilson said. Tiffany spontaneously developed the variant in utero.
It was a relief to finally know what was driving all the issues that their daughter was experiencing.
“But now, because it had taken us so long to get to that point, we were behind the eight-ball,” Jennifer Wilson said. “Because inside she was falling apart.”
Most people with Marfan syndrome live with few complications until later in life, she said. In their late 60s, early 70s the damage done by the disease becomes apparent, Jennifer Wilson said. But with Tiffany, they have spent her childhood just trying to keep her comfortable as one health issue after another plagued her.
She has had six surgeries in her young life and another is planned in August. She has traveled between Children’s Hospital in Atlanta and Johns Hopkins Hospital in Baltimore for treatment for years.
“We travel to Baltimore MD every three months to meet with her awesome team of specialists that work tirelessly to bring Tiff a better quality of life,” Jennifer Wilson said.
But all that travel takes its toll on the family. Tiffany can’t go to school. She attends Newnan High School through hospital homebound lessons.
“I’m doing it online,” she said. “It’s very frustrating to figure out everything and how to fit it all in.”
She’s been able to maintain her A grades, but it’s difficult particularly with some of the medications and the intensive therapy she undergoes, Tiffany said.
Both Jennifer Wilson and Tiffany described the isolation that being away from home can cause. Dad has to work and can’t always come on the trips and the financial pressures were always there, they said.
“The constant loneliness is really hard,” Tiffany said. “When you go out of state you really don’t have that kind of connection like from your hometown.”
Finding a home and support
Luckily, when Tiffany was in middle school, another mother whose daughter also had to go out of state for medical care told them about RonaldMcDonald House.
Ronald McDonald House has been around since 1974 when it opened its first house in Philadelphia. By 1979, when the first Ronald McDonald House opened in Atlanta, there were 11 house programs in the nation.
Today, there are two Ronald McDonald Houses in Atlanta and the program is international helping families whose children might not have access to the care they need otherwise, said Tracey Atwater, president and CEO of Ronald McDonald House Atlanta.
“The only criteria is that you have a sick or injured child and you travel more than 50 miles for treatment,” Atwater said. “We alleviate that burden of being in a hotel and the financial complications that come with that.”
Ronald McDonald House
The Ronald McDonald house provides a home. The families have access to a kitchen and laundry room. Their meals are provided taking a load off the parents who have already been through a stressful day of treatment with their child.
But it also provides support. Everyone who stays there is there under similar circumstances, Atwater said. She loves watching the families staying at the house bond together, she said.
One of the first people the Wilson’s met in Baltimore was a family of another patient with connective tissue disorder. It was an even more rare disease than Tiffany’s. They have since met many families that they keep in touch with even outside of travel, Jennifer Wilson said.
“It just gives you an opportunity as a mom and a dad and a family to keep in touch with these families and see ways that we can all lean on each other because we all share the same struggles,” she said. “It’s good to have that connection and feel part of a group that has the same, similar struggles.”
Tiffany said she loves going to Baltimore and the fun activities that the Ronald McDonald House offers. One of her favorites is the therapy dogs that visit.
The Ronald McDonald House in Atlanta hosted about 3,500 families in 2025, Atwater said. “One family had more than 30 separate stays with us,” she said. “Our goal is to support the family when their child is going through this health crisis.… It improves the health outcome for the child.”
According to a survey of international hospital executives and administrators published in 2015 on the National Library of Medicine, “Hospital leaders reported very positive opinions about the contributions of their RMHs affiliation to their ability to serve seriously ill children and their families. This included such important outcomes as increasing family integrity and family participation in care decisions, and decreasing psychosocial stress and hospital social work resource burdens associated with lodging, food, transportation and sibling support.”
The houses are all funded by donations and hundreds of thousands of volunteers help staff them. For more information visit https://ronaldmcdonaldhouseatl.org/
– Laura Camper
